Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, July 10, 2011

School plans for fall: Pt 1

*note* I originally wrote this as one long....very post. You would have had to go through an entire pot of coffee to get through it. It would have taken up all of your precious blog reading time. So I've split it into two posts, and you'll only go through half a pot and if you're really lucky, still have time to catch up on facebook or other blogs. LOL

The end of the 2010-2011 school year brought lots of changes in our house. Angela reminds me that, "Next year I'm a 9th grader. A freshman. I go to the high school! YAY ME!" Seriously, I hear some version of that multiple times every day.

Sometimes she'll ask me, "Mom, what's in September?"

I play dumb, "I don't know Angela. Is that when we're going to the moon?"

(slapping her hand to her forhead in Angela-like dramatics) "NO!!! That's when HIGH SCHOOL starts! You know, ME! I'm going to the HIGH SCHOOL!"

Gee, how could I forget?

Needless to say, transitioning to the high school requires lots of planning and some wringing of hands on my part. The bus comes EARLY, like 6:50 a.m. early. It's a half hour earlier than her bus came in middle school, but I think she'll be fine. She's so excited to get to school every day that only rarely did I have problems getting her out of bed. In fact, she often beat me to the kitchen! I'll be praying this year goes just as well.

The biggest changes in September will be for Axel. I have shed more tears about this child's education than I've EVER shed in all of Angela's 10 years of school. These decisions have caused me more anxiety than I ever imagined possible. I cannot explain it. I have no doubt I have caused some staff within our district to think I have totally lost my marbles. I think it's because I brought this child half way around the world to give him a life he could have never had otherwise, and I'm not about to let anyone or anything stand in his way. I also know that just as with Angela, I am Axel's voice.

Axel's communication is 100% ASL, with only a handful of words that he's able to say verbally. But in sign? He is SOARING! He is gaining, on average, 3-5 new signs EVERY DAY. If you show him a sign once, he's got it. He will play with the new sign a bit, practicing how to use it, and wanting to see me using it in as many ways as possible so he understands how the sign is used. He still usually only uses one sign at a time, but longer phrases are emerging. This morning he was outside with Dean. It is 85* out there, with 50% humidity, making it feel like 94. (Far too hot for a little boy encased in a lambswool vest!) He came in the door, "Mama! Mama!!" This is a HUGE step! HUGE!

Being home with just me he was SO BORED, and he had started dreading our lessons. If I'd had a house full of kids I would have home schooled him in a heartbeat. But he needed kids. He needed friends. So off to school he went. The program he was in is not set up, nor does the staff have the appropriate training for a child who's signing at the level Axel is at. Axel has very unique language needs, which the staff was not prepared to meet. (nothing wrong with that, they can't be trained for everything!) I knew the very first day that it was the wrong placement, but during his assessment process way back in February I had no idea how far he'd really come with his signing, and how his communication needs were just not going to be met in that classroom. I came home that very first day crying. I couldn't believe I had under-estimated my son so badly. I couldn't believe I was going to leave him there, with him feeling lost and with incredibly limited communication with anyone. But he needed to learn about "school" and what happens when a person is there.  He needed to learn things like how to ride a bus, how to walk in a line, how to listen to and follow directions (from someone other than me. LOL)

n the 6 weeks he'd bypassed ALL of the goals written for the entire year. We'd just been guessing you know. Not really sure what exactly Axel was capable of doing. A year of goals, met in 6 weeks. And yet  he'd lost a lot of what I had taught him in early reading skills. His counting that was solid went he went to school was  now shaky. He learned to zip his jacket back in February, and yet one of his new IEP goals was to zip his jacket independently 75% of the time. OHhhhh I see!!!! Axel had clearly pulled the wool over some people's eyes and had them convinced he was needing help with things he could do on his own! (They're not the only ones who fall for this, by the way! Dean and I have both been fooled many times. LOL)

 If you've been reading here a long time, you know I didn't spend that 6 weeks Axel was in that classroom just twiddling my thumbs, waiting to see what happened. I knew of other programs in the area which would be more appropriate for him.  All were out of district, meaning it would be tough to get him  in. I had my sights on one program in particular. The problem? It's for students who are deaf or hard of hearing.

Axel doesn't have hearing loss.

This program is a full-immersion ASL program, with the addition of Cued Speech for those students who's parents want them exposed to it. I am a HUGE advocate of Cued Speech, particularly when talking about hearing students who are hearing English, but haves speech and language delays. Full immersion ASL would mean that Axel would be able to freely communicate with both staff and students in the program. It really is the Least Restrictive Environment for him. The downside is that, while he would still get speech therapy there, the emphasis in the classroom is not on speech. Guess what? I don't care! The emphasis in this classroom is LANGUAGE and communication. That is what Axel needs right now. His speech will come later.

So I asked my district for a couple of things. One, was to have the staff from our district's deaf/hard of hearing (dhoh) program to observe Axel in the classroom. They are the only ones who would be able to observe from the perspective of a student who uses ASL. My other request was for me to observe the other program. I knew a lot about it (I used to be in the field, and the staff there was familiar with my work with kids with DS who use Cued Speech, and had attended Cue camps with many of the staff.) but I hadn't seen the program in action in years. Maybe what I remembered was no longer applicable to the program. I wouldn't know without seeing it.

Our district granted both requests, with the agreement that we would meet at the end of Axel's six week stint in school to go over all the observation reports and figure out placement for fall.

One of the observations I'd made during Axel's first day of school was recorded here. This was my epiphany moment. Axel's very first day of school ever in his life. It was like getting slapped in the face.

Axel's sign vocabulary is already well beyond that of the classroom staff. Because of this, he will be missing many opportunities every day to learn new signs. One example is during their morning meeting time. The classroom teacher is not able to sign the numbers past 10 or 11, they counted by 1's, 2's, 5', 10's up to 122. As you know, a student learning to count needs to hear the numbers many times before they can do this on their own. Likewise, a student who signs need to see them just as often before they are able to sign them. The teacher counted money up to $1.22. (to match the number of school days thus far) Because the teacher does not know the signs for penny, dime, nickel, quarter, dollar, cents, etc. Axel did not have access to that vocabulary. I estimate that during that one hour block of time Axel would have been exposed to 50-60 signs he'd never seen before. If he saw them every day he'd be able to produce them after a few exposures. Staff was able to witness this today when I introduced the sign for "line up". Axel had never seen this sign before. I showed it to him twice, and how to form it himself. Half an hour later, the music therapist told the 1st graders to "Go lineup", and Axel signed, "line up".

So fast forward a few weeks, when I visited the ASL program. Although I wasn't there until 10:30 a.m., it just so happened it was calendar time. The students were counting (in ASL) how many days of school had passed so far, they were doing patterns (blue, yellow, blue, yellow) that were built into the lesson, counting money, learning new ways of greeting people, learning to ask questions of their classmates, days, weeks, months, year...all the usual calendar stuff. All in ASL.

I tried to keep the tears from spilling out of my eyes. I knew this was where Axel needed to be.

Then we went across the hall to the Cued Speech program. Most of the students there have cochlear implants and are learning to use the sounds they're hearing. Some of the students are deaf, and using CS for reading and learning English. The classroom teacher introduced Axel (all in CS w/voice remember) and each of the students introduced themselves. All in CS with voice from those who were able.

Axel is just learning to cue, but I am the only one he sees it from, and yet he is starting to produce cues on his own. Here he would see it everywhere, it would be encouraged and reinforced.

(More tears from me.) There would be no limits for him here.

Could I get our home district to agree to send him?

To be Continued.....

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